Monday, September 19, 2011

Mito is a Mess

On Sunday night Neil and I attended a fundraiser for the Memorial Hermann Mitochondrial Center of Excellence. The CEO of MH and Children's MH were in attendance as was Dr. Red Duke and Dr.Taegtmeyer. Dr. T was really one of the only pioneers in researching and understanding the relationship between metabolism and mitochondria and helped put mitochondrial disorders on the map.

Dr. Koenig was honored last year at the event and also spoke at this years event. They had a silent auction with some of the art work created by children with the disease. We bid on one item, but don't know if we won. If we did, we'll donate it back to Dr. Koenig's office for decoration. Next year, we'll be donating one from Will! Overall it was a good program and hopefully raised some money and awareness.

It's amazing to think that this center started five years ago with ZERO patients and it now treats 300 patients. Dr. Koenig showed a map of all the states where they have patients. I'd say at least half of the states were highlighted. I couldn't imagine living in Florida and coming to Texas just to see a doctor. That's how few doctors understand the diesease. It's a complicated disease because it affects so many systems - heart, lungs, brain, eyes/vision etc. There isn't just a one stop shop.

I was constantly reminded last night and during the past year that we are REALLY lucky to live near such an abundance of really smart people who practice really complicated medicine.

This event kicked off what's been nationally recognized as the Mito Awareness week. So, every day this week I'm going to try really hard to post something daily about the disease. I missed yesterday, so I'll do two posts today - I sound like I'm on a weight loss program. Oh wait, I should be since I've been hosting pity parties - party of 1 - and eating my way through them. That and I'm a bridesmaid in a wedding this spring.

Sunday's Mito takeaway: Mito is a messy disease. There is no cure and it takes a village to help "treat" the child. Send a little prayer to the big guy upstairs that those families who do not have easy access to advanced health care find it.

Our latest addiction - firetrucks. I downloaded this firetruck app on the ipad. It's four videos about 2 minutes long that show real life firefighters and where they live, their tools and how to fight fires. Every day he asks to watch it. I think it might have replaced Barney.

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